Nearly six years ago we learned our son would be born with spina bifida. One of our biggest fears had come true – we would have a child who was considered by society as “disabled”. So many fears we once had have come true. But Chance continues to remind us – his disability won’t hold him back.

Although he’s faced so many challenges since birth – we are beginning to sense we have just begun the real struggle to help our son. Those medical challenges he’s faced, the surgeries, the therapies and appointments – we look back now and realize they were nothing compared to the struggle we now face with the public school system. And to think – we have just begun this journey. Don’t be fooled by this ideology that we’re superhero parents – raising a child with special needs is HARD. It’s so much harder than we realized.

As Mr. Rogers once said, “Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities. ”

This quote has reminded me that the problem isn’t that our son is “disabled”. Sure, he may need help walking, he may need a wheelchair, he may require additional medical care, including being catheterized – but the reality is the real disability remains in the school system.

Today we attended Chance’s IEP meeting before he is scheduled to start Kindergarten this August. We were hopeful and took every measure to clearly outline our requests and even have had every pediatric urologist in the central Florida area who cares for spina bifida patients sign a letter approving our request for a non-medical person to be trained to do his care. Our son’s medical team agrees with our request. Regardless of if we have staff in the school willing to help, the district told us today they are unable to approve our request. Instead, they’d prefer to have him attend school at the center school for medically disabled children. Although they do have a mainstream class that he’d be able to attend – he would be asked to go to a school where many other significantly disabled children are sent.

When we discussed the topic of his cathing support needs, the school refused to consider our request – it was clear their minds were made up before the meeting even began. And as they began to quote district policies and their own stand point – over and over I heard them refer to the “safety” and their “protocols” – not what was in the best interest of our child…but what was in their best interest. Never once did they share these policies with us – and they feel they can supersede the state law to be “safer”. We haven’t even begun school and the school system is more worried about a liability than how much they can support a child who could thrive in the school all of our children have attended. Taking our son away from our home school and from his brother would only harm him socially – and asking them both to relocate to the school the school wishes will affect our entire family negatively.

Most days Chance asks us “Do I get to go to Riverdale now?” often followed by “are you still fighting for me?” To the school system they don’t think it’s a big deal to just send a child to any school – but for years our son and our family has looked forward to the day he would start school at Riverdale. We never once thought of another option – we honestly didn’t think we’d have to fight this hard. This is one of the hardest lessons we may need to teach our son…and just the beginning…that not everyone will perceive his “disability” the same as we do…and that we are going to have to fight sometimes – not for what is easiest – but for what is right.

Our son hasn’t even begun school and we are in the process of filing a complaint to request a due process hearing. He hasn’t even started school – and we have to go through these measures. There is something so wrong with this. Families raising a child with special needs go through enough – we shouldn’t have to fight this hard just to enroll our child in school. We are working with a school system where many educators within their school system have said they are the “worst” at meeting a child’s special needs – a school system that isn’t receptive to change or willing to adapt to meet a child’s needs. Please don’t tell me about “policies” when you can’t even provide them at a meeting – besides, as an educator I’ve learned there are rules to be followed – and rules worth breaking for the sake of a better outcome. You can’t say it’s not possible – I’ve learned of countless families who have received the support in other counties. It just makes no sense at all why one of the largest counties in the state of Florida isn’t receptive to meeting a child’s needs – not the school’s needs – but a child’s needs. Serve a child in their home school when parents request it – it should not be this hard. Cathing is not that hard…and please, don’t feel bad for us or our son because he requires cathing – feel sorry for the school system who isn’t willing to adapt to a child’s needs…they are the ones with the real disability.

Five and a half years ago we wanted to give up so badly when we learned about Chance’s spina bifida…this journey seemed like it would be too hard. It is hard. But it’s also rewarding and so meaningful. We know we are on this journey for a reason. Five + years ago we didn’t think we were capable of raising a “disabled” child. And at the time we were frightened of the thoughts of cathing. We’ve been battling the school system for nearly a year and a half and here we are frustrated feeling once again like giving up might be “easier” – to just do what they wish. But our job isn’t to make life easier for the public school system – the day we promised not to give up on our son’s life – we promised we would fight for the rest of our lives…for everything our son needs.

We will fight – for Chance…and for every single child who may someday need support cathing in school. A change is needed – and laws need to be improved so that schools are held accountable. Instead of worrying about their own liability they should be worrying about what is in our son’s best interest. Someday I am hopeful the school system realizes as Chance tells us – cathing is “no big deal”. I vow to continue to remind the school system just how “disabled” they are every time they make our lives harder because of our son’s disability.

Joseph went through public schools here in Waynesboro. He had an IEP and went to the nurse’s bathroom to cath and deal with colostomy issues. He was in a wheelchair as well and the teachers knew he was to be allowed to go to the nurse whenever he needed. He also had access to water at all times.

If I can help, call or email me.

I get it.

June 1, 2016 - 6:40 pm

CT_Mom on BabyCenter -Oh, Amanda, I am so sorry. I had to fight a smaller fight to get April into public pre-school, and that was hard enough! (her issue was that they claimed a lift-equipped bus couldn’t drive on a city road to reach our driveway. But every other vehicle somehow managed it? And there were battles from/with/over the school nurse to the point that she no longer works in April’s school. At all.)

One tip to pass along: I’ve found it is VERY helpful to have April in the room with me during all meetings. It keeps the adults from the school on their better behavior, and for those who don’t know her already, they can see with their own eyes how normal she is, despite the volume of medical information that comes with her.

Contact your representatives. Local level. State level. Federal level. It helps. It really, truly helps, if you can get their offices working on your side. Those other districts around you didn’t just magically decide to be supportive. Having someone bigger and stronger roaring on your behalf can help, especially with schools.

August 15, 2016 - 3:52 pm

Jennifer Wray -As someone who grew up with disabilities, I can totally relate. I was born with several medical issues and it was a fight for my mom to get me into a normal public school…just because I’m physically different doesn’t mean I’m intellectually any less capable than a “normal” student. We finally got me enrolled, and the fight still wasn’t over. The school tried to tell my mom she should take me out of school, and gave her info for schools that can “meet the needs” of a disabled child. Thank God my mom did not take that as an answer and fought ’till the end for me. Sure, school was a little more difficult for me…I missed a lot due to my doctors appointments and surgeries. And sometimes the school had to make special accomidations for me. But I graduated on time with a good GPA and now I’m in college doing just fine. Your son sounds like a fighter and like a strong little boy! Keep it up because you’re doing something right. Never let him lose his spirit. It won’t be easy, but It’ll be worth it! Good luck with everything!

June 2, 2018 - 4:34 pm

Leah -Oh god.

I’m nervous about this for multiple reasons. I am both excited and nervous about the day that Logan will start school for the first time in a few years time. When I have to attend such meetings I plan on having him present for them in the room as well as his twin sister. Also I will have to get the contact information for my state and local representative just in case I need it. Hopefully I’ll be listened to and rightfully respected as a valuable member of the IEP team. This is the only part of being a SB mom which I detest wholly.

“It’s not how much we give but how much love we put into giving” ~Mother Teresa

So here’s the deal….it’s GIVING TUESDAY, right…and I can’t let the day pass me by without “giving” – but an even more amazing thing would be encouraging others to help me give. I’m giving away an opportunity to win a photo session +prints with me or a photo mentoring session. Bear with me as I share my heart as to ‘why’ I’d like you to give first.

If you’ve been following my photography you likely already know – just over 5 years ago we learned my son Chance would be born with the birth defect spina bifida. The diagnosis is a pretty scary experience…hearing he’d be born with the most ‘severe’ type of the birth defect didn’t help. It was also tough hearing I shouldn’t “google” the topic – and after receiving information that was 20-30 years old I admit…I couldn’t help but search online for information and support. I was more terrified the more I learned from the resources I found.

Looking back over the past five years its been an observation that resources mostly tell families what is “wrong” with a child with spina bifida. While resources may give a medical perspective of the birth defect, they don’t really share what life with spina bifida is really like. There’s little hope or optimism shared after a diagnosis – but from the moment our son was born that’s all we’ve experienced. Chance has surely faced a great deal of adversity in his life – but he’s proven his life can be amazing and he’s one of the coolest kids on the planet! I still think back to five years ago and remember it like it was yesterday – like so many other families – we were so frightened and we seriously considered all of our options, including termination. Now that he’s here it’s hard to believe we nearly gave up on our own child’s life. Why? Because of the challenges we were scared we could care for? Because we didn’t want him to suffer? Because we didn’t know if we or our family were strong enough to care for a child with significant needs? Well we are…and this kid has proven how remarkably amazing it can be to live through the uncertainty of living with spina bifida.

The past five years of my life I’ve devoted a considerable amount of time photographing individuals living with spina bifida. I’ve not only lived with the challenges and triumphs raising our son, but I’ve been honored with the experience of meeting so many other families who are living this journey. I’ve seen the struggles and witnessed the happiness that can be experienced. My heart has ached for the many families I’ve since met who have also received the diagnosis – knowing they’ve faced the same tough decisions and fears for their child’s life.

Over the past year I’ve teamed up with a group of professional photographers who have also begun to volunteer their time to photograph families affected by spina bifida. Every photographer has a direct connection to spina bifida just like me. We’ve had several other volunteers also join our group who have a passion for helping the spina bifida community. After doing extensive research we realize so many of the project ideas we have to create awareness of spina bifida and to help improve resources would require funding. In May 2016 we received 501(c)3 status as a non-profit with the hopes it will help us ensure we are able to seek the support needed to make our vision a reality. Just over a year ago we began a facebook page and are currently working on branding, our online presence and other resources such as a resource for newly diagnosed families – all of which require support.

In the past year our page has seen nearly 8k fans in more than 45 different countries. Just this past month we’ve received communication from families in the U.S., various countries in Europe, Iraq and Australia – newly diagnosed families or new parents who all sought support and were praying to find hope. It’s 2015 and sadly so many newly diagnosed families receive little to no information about spina bifida, receive outdated information, or are encouraged to give up on their child’s life. It’s 2015 and its sad to know that prenatal resources primarly share only what is ‘wrong’ with a person’s life who is born with spina bifida. These kids are so much more than their diagnosis and families deserve to hear just how much potential their lives hold. Spina bifida is the most common permanently disabling birth defect yet so many around the world still know very little about it. It’s time we help improve the world’s perception of spina bifida – the team of volunteers I have worked closely with this past year truly believes it is possible – we hope to be the change we wish to see in the world.

So its time to share my giving opportunity. As many of you know, our son Chance has a surgery coming up – so we’ll end this opportunity on December 6th, 2015 so that we can announce a winner on December 7th before he undergoes surgery the following day. Here’s your opportunity to either win a photo session + prints or a photo mentoring session…

FREE PHOTO SESSION ELIGIBILITY?
Here’s what you have to do for a chance to win a FREE photo session for those who care to participate.

After you’ve donated if you’d like to earn additional entries into this contest you can share on social media (only if you’ve made a donation too) – be sure to email me to let me know you’ve shared the fundraiser on social media.

Email me to let me know you’ve donated and shared the page – email me here: amanda [at] amandakern.com When emailing me share with me your donation amount, name, contact information and the ages and number of people of who you wish to be photographed so that I can get back in touch with you if you are chosen. If I don’t receive an email from you your name will not be included in the entry. If you donated prior to this announcement I will still honor your donation as an entry – just send me an email.

You may enter as many times as you like. For every $10 you donate your name will be entered into the photo session giveaway if you have emailed me your donation confirmation. (You can make a larger donation and have it counted as multiple entries…for example, a $100 donation would equate to 10 entries).

To be eligible for the free photo session you must donate prior to Dec 6, 2015 at Midnight. The names of those who have helped me will be collected and a winner will be chosen randomly. Entries will ONLY be accepted until Midnight on Dec 6th, 2015. A Winner will be announced on December 7th, 2015.

IF YOU’RE THE WINNER…If you’re chosen as the winner you will have two options.OPTION 1: FREE PHOTO SESSION + PRINTS!

A free photo session with me that will last 1-2 hours for you, your family, or someone you wish to give the session to.

The session will be valid between January 1, 2016 through December 31st, 2016.

You will receive all edited photos in HIGH DIGITAL RESOLUTION format. Yes, I said FREE. That means I earn NOTHING by giving.

Your session will also include one canvas print 18″x24″ as well as a print package including (2) 8″x10″ prints, (6) 5″x7″ prints, (10) 4″x6″ prints, and (2) set of 8 wallet prints.

You will be given permission to print and share online all digital photos for personal use.

*By participating if you win you agree that photos may be used in my portfolio.**You must be in the immediate Orlando area or willing to travel to Orlando if you win.***The value of a custom photo session w/high resolution photos and prints is $1000.

OPTION 2: PHOTO MENTORING SESSION
I’ve received a lot of requests and inquiries for me to offer “mentoring” sessions. I’ve lost count of how many people have asked me “how” to I do something or if they could just spend an hour or two with me to see how my photography and/or editing approach. If you are chosen as the winner you have the option to select the mentoring session and it will be customized to meet your needs.

A free photo mentoring session with me that will last 1-2 hours. This includes the opportunity to sit in and participate in a photo session with me.

The session will be valid through January 1, 2016 through December 31st, 2016.

The mentoring session will be customized to meet your needs and could include tips on photography, editing or a combination of both.

*By participating if you win you agree that photos may be used in my portfolio.**You must be in the immediate Orlando area or willing to travel to Orlando if you win.***You are suggested to have a digital slr, photoshop and lightroom. If you don’t a mentoring session can still be offered but it may make more sense if you have access and/or a little previous experience to these things.

Whether you’re able to donate or not, perhaps you can help spread the word to others you might know that might be interested in supporting the cause or who might be interested in my photography. Thanks in advance for everyone’s support. Together I know we can improve the world’s perception of spina bifida.

You are still so young and I’m not sure you’ll fully understand the news we will have to prepare you for – but it only seems appropriate to express my heart as we must now also share this news with our family and friends and the many people who have come to adore you. There’s no easy way to share this news – in a few weeks you will need to undergo your 14th surgery to detether your spine. You and so many of our loved ones probably don’t understand what that means – so I pray sharing this update will help our loved ones understand what life has been like this past year – and what has lead to the need for this surgery.

At the start of the year I recall dreaming you’d gain strength to walk independently – but truthfully was just as excited to see you begin to learn to use your crutches independently. By February you mastered them within a week of receiving your own pair – and we were feeling more confident than every before that you might someday also take independent steps someday.

Over the spring you began to get stronger and showed a lot more confidence in using your crutches. You’ve been such a proud little guy who was proud to have improved your ways to move around. You proclaimed often that you wanted to walk all by yourself – and you wanted to use your crutches just about everywhere we went. But in the spring was also when some of these symptoms first began. We noticed you complain multiple times of back pain and neck pain. We even did an MRI this spring to check on your back – and things really didn’t look much different from the past two year’s worth of MRI’s. We all agreed that physically you were looking stronger and we agreed to watch you closely.

You’ve also had many headaches. A month or two before your shunt malfunctioned we did a 24 hour EEG and it showed your EEG activity has progressed and has begun to show new activity on the opposite side of your head.

We continued to do therapy and did all we could to help you get stronger – you worked so hard and looked so strong. You’re one determined kid Chance – through all of these challenges you try so hard to do things that are tough for you.

At the end of May you went through your 13th surgery for a shunt malfunction – you show symptoms so clearly when your shunt is failing – but you rebounded quickly. Though you continued to have headaches most days – they would pass and you would continue to show your spirit to us all. This photo was taken on Father’s day this past year – and have to admit it reminded me that you have some very special loved ones in heaven looking down on us – and my heart was reassured this very day that they will help protect you through every challenge you may face in life.

The toughest part of surgery is that you always have to wait six weeks to be allowed to swim again. We counted down the days after your 13th surgery and exactly six weeks post-surgery we went swimming. Most who don’t spend their entire day with you don’t see the symptoms and challenges you’ve been facing – and often times they passed within minutes. It has made it hard to help everyone understand our concerns. I still remember your excitement to swim that day and an hour later you grabbed your head in pain – and cried “my head hurts”. The most we can do is reassure you that you will be okay – we watch you closely and almost always it passes within minutes. For the past few months these headaches have happened most days at least 1-3 times – sometimes as much as a dozen times in a day.

Though you were having headaches just about every day and beginning to make us worry that your shunt was failing again – you continued to work so hard every time you had therapy. I still remember these two days of therapy so well – both days you showed us signs that something just wasn’t right…you weren’t feeling well but continued to work hard.

At the end of July you had your bi-annual spina bifida clinic – it’s when we get to meet with all your specialists and discuss our concerns. I still remember telling doctors that I feared something neurological was going on or that your shunt might be failing. Over the summer you began to feel more nauseous as well – I recall asking your doctor for anti-nausea medicine because you would feel sick, gag or get sick at least a few times a week. I wished medicine would help you – but it really didn’t make a difference.

The hardest part was that your symptoms hit you so fast that you would get a headache or feel really sick or tired with such short notice – and sometimes the moments would pass fast – usually most of your days you were still so energetic and just as happy as we all know you are.

At times it felt like it was an every day event where part of my day was spent holding you with head pain – and the next minute you were acting super silly.

We agreed with your neurologist that we’d repeat an EEG and see if results changed. We were asked to press the event button to alert them if you had any headaches – I we pressed that button a few too many times and I feared the results. Thankfully your EEG activity has not increased – and we were reassured that headaches were not happening with EEG activity – which was great news.

Over the first few months since your last shunt surgery we saw your neurosurgeon several times – she even reprogrammed your shunt 3 different times. The hope was that your shunt was only overdraining – a CT scan confirmed that was the case. Because it’s a programmable shunt she was able to change how much your shunt was draining the CSF fluid from your head. Your headaches still happen for brief periods of time even after reprogramming your shunt a few times.

In addition to nausea, gagging, and getting sick – you began to get abdominal pain. We began to grow more worried because there seemed to be so many symptoms happening. In September we did 3 different ultrasounds to rule out a pseudo cyst, to check on your bladder/kidney health, and to take a look at other parts of your stomach. All of the tests were inconclusive but every day you continued to complain of stomach pain, nausea, and somedays you were getting sick.

This September we signed you up to do intensive therapy. We had so many of our friends and family donate to help us pay for physical therapy that is not covered by insurance. You responded so amazing to this therapy and worked so hard. We truly love the therapists at Believe Therapy because they’ve helped you work so hard to get stronger and helped you have so much fun doing so.

During your therapy sessions you continued to work hard but you continued to have random headaches, stomach aches, and you began to complain of other pains. You had moments where you had brief pain hit you in your neck, shoulder, arm, hand and sides. A few times you also complained of knee pain and your little toes began to move more than we’re use to seeing. You do have some movement in your toes but due to your spina bifida it’s not a signifcant amount – but by September your toes began to twitch and move involuntarily. All these symptoms didn’t prevent you from working hard – you loved playing blast off, pretending to be a ninja, riding a pretend horse, flying like superman, playing football and basketball and pretending to launch like an angry bird.

The team at Believe Therapy helped you so much – and by the end of your intensive therapy you were beginning to stand in the therasuit for longer period than you had ever done before.

By the end of your therapy session I began to notice your left leg turning inward slightly. I’ve said all this time this year that your little legs are growing and that perhaps it’s just a little harder for you to control your legs and your balance. But before the end of September we noticed you beginning to trip more too – and on the day we saw your foot turning inward more we took this video. It was the first sign of changes in your mobility that often occur with tethered cord.

We put you through more tests, your second sedated MRI of the year to check on your brain and spine. Through it all you’re smiling.

With all the symptoms and pain you were experiencing we were truly expecting to see changes in your MRI – but really this test looks nearly the same as the last few you’ve had. Two years ago you underwent a chiari decompression to help improve symptoms you were experiencing – and we saw great improvements but this year your little body is telling us something is wrong. In this first MRI image you can see your spine and within it is the syrinx we’ve known has been present since you were a baby – it’s a common thing to happen with people who have hydrocephalus and typically isn’t a huge concern unless a person is experiencing symptoms. The more pressure within your spine in the area of your syrinx could impact how your body functions.

This second image of your spine shows your birth defect – and also the area where your spinal cord is tethered. Everyone living with spina bifida is considered to have a ‘tethered cord’ – essentially it means your nerves are intertwined in the scar tissue that formed after your birth defect was repaired. Usually doctors don’t intervene until a person is experiencing symptoms. Tethered cord can impact many functions in a body as a person grows – and happens most common in children between your age and the teenage years – it happens most when a person goes through major growth spurts. You’ve definitely grown a bunch this year. We began to suspect you might be experiencing tethered cord symptoms since September but agreed to find out the results of other tests that could help us confirm your body was experiencing a decrease in function.

A few weeks ago we had you go through a GI test – I admit i was fearful to head to a test that was ran by ‘nuclear medicine’ – but we were reassured by your GI doctor that it would help us better understand your stomach issues. This test required you eat food and take pictures several times over the course of several hours to see how quickly your food would move through your upper stomach. This test helped us rule out reflux and we were able to confirm that your stomach is ‘emptying’ food from your upper stomach very slowly. From a GI stand point we can give you medicine to help you some – but it has been one more sign that helps show your doctors that your body is experiencing neurological changes. By this point you also began showing signs of changes in your bowel function – which has been frustrating knowing we’ve come so far to help you be healthy and work towards continence and strive for independence in your own care.

This past week we took a trip up to Jacksonville to visit their urology team to do a urodynamics test. We met the most amazing team who truly cared and did all they could to accommodate your appointment in order to help your doctors do one final test to help us determine if surgery is needed. We left learning your bladder function has changed – it has decreased and the bladder pressure has increased. Over a long period of time it is not good for your body to experience the pressure we witnessed during the test and could impact your bladder and kidney function further. I left this test knowing you would need surgery.

We met with your neurosurgeon Wednesday. When we first arrived you walked around in her office for us. I noticed your leg turning inward more – and you began to trip a lot more. I have kept saying maybe you’re just growing and as your legs are getting longer maybe your just learning to walk with these new changes…but no, we know now that these are very clear indications that your spinal cord is tethered and that if we don’t intervene you may experience a permanent loss of function.

Your neurosurgeon is the best – really, she’s the one who helped us find optimism five years ago through a really tough decision…and here we have been the past few months suspecting we may have another tough decision ahead of us. Five years ago we were frightened of all of the challenges that may come with spina bifida – I still remember reading about tethered cord back then and thinking that we didn’t know how we’d care for a child who might have such significant medical needs. We prayed none of these things would happen to you…but Chance the day we vowed to continue your life – we vowed to love and protect you and make sure you received the care you needed to live the most amazing life possible. We hate knowing you have surgery ahead of you again – but we know this surgery is needed and may help improve the symptoms you’ve been experiencing.

We’re hopeful our family and friends don’t feel “sorry” or pity you for the challenges you have ahead. We trust they will help us show you the love and support you need to know you are loved and that you are strong enough to endure the challenges ahead of you. You were born with the strongest soul I know. Rather than questioning why this is happening or why you have to go through so much – we’d rather remind you and our loved ones that you were born with the strength to endure the challenges. We trust God’s purpose – even when we don’t quite understand it.

Chance our family is stronger with you here – and we will help you stay strong and show you all the love needed to see you through the medical moments you have ahead. We love you.

Deb Heming -He is so brave and strong and such a cutie. He is also blessed with very loving parents. We will pray for God’s wisdom for the surgeons & for a good outcome. Blessings, Deb Heming (Chris’ mom)

November 14, 2015 - 2:20 pm

Cynthia Downey -I knew you were talking to my sister Marilyn about this tethered cord issue, another battle for this little guy. He is so brave and hopefully, this will be the right surgery to conquer the battle of the headaches and nausea. Our thoughts and prayers are with you during this time.

November 15, 2015 - 11:01 pm

Amanda Saulter-Chance is such an inspiration. He will get through this surgery and continue to bless us all with that amazing smile. We’ll be thinking of you all during this time and pray for optimal results. Much Love, Amanda & Jaxon

Just over five years ago I first learned what spina bifida was when we learned my son Chance would be born with it. For those who don’t know – it’s a complex birth defect that often requires a lifetime of a medical care. Don’t google it – in addition to hearing that a child may “suffer” from this birth defect you may be horrified to see the images or learn just how many challenges a child with spina bifida may face in their lifetime. Much of the information you find online about spina bifida isn’t encouraging to anyone trying to learn more about the condition. Far too often society learns what is “wrong” with a person living with spina bifida before they are ever able to acknowledge their potential. Most born with spina bifida undergo surgery within the first days after birth and typically spent days to weeks in the nicu. From the beginning they are not “suffering” – they are demonstrating their strength.

Just because a person is born with this birth defect doesn’t mean they will live their life suffering and they definitely don’t need the world to feel “sorry” for them. Often times people learn of the medical challenges that could happen to a person living with spina bifida and they fail to see beyond the challenges to see the beauty that can exist in the life of someone living with this birth defect.

People living with spina bifida – are people just like you and me. They are resilient spirits who have faced adversity. They can lead happy lives and have proven their lives can hold so much promise.

My son has been through insurmountable challenges since he was born – he’s only 4 ½ years old and he’s been through more than many face in a lifetime. He’s underwent 13 surgeries and has spent 6 weeks of his life hospitalized.

He’s been through hundreds of tests and doctor’s appointments and has spent hundreds of hours in physical therapy.

But let me make something absolutely clear – our son is not suffering from spina bifida. He is living with spina bifida.

Through every trial he’s faced he shows incredible strength and resilience. My son has endured a lot in life – but if you ask him or anyone who knows him – he’s not suffering from spina bifida. Enduring challenges should never be misinterpreted as “suffering”. Through it all – he smiles and reminds us that he is strong enough to live through the challenges he faces in life.

He faces many challenges in his life, but doesn’t everyone? His challenges are just a little different – but he can live through them. He can thrive. He has proven he can survive and live with his spina bifida. Rather than making the world believe that my son is leading some devastating life “suffering” – we need to instead remind the world that he and every person living with spina bifida can live a great life.

In fact, thanks to his spina bifida we find we celebrate life a little more. Every single milestone leads us to celebrate the great victories in his life – and yes, it helps us appreciate life a little more. We don’t have time to feel sorry for all he’s gone through or anything else he may endure in the years ahead. No, we are on a mission to help him learn to live an amazing life with this birth defect. In fact, we’re quite amazed that he is capable of doing many things that other kids his age can’t do.

Yes, perhaps the world needs to hear that those living with spina bifida have become stronger living with spina bifida rather than hearing that they are “suffering” from it. Our kids go through enough in their lives – they don’t need you to feel sorry for them or show them pity or think that their lives are anything less any other person’s life. My son’s life holds amazing possibilities.

Spina bifida is a diagnosis, it’s not what defines a person’s life. As a society we need to see beyond the struggles they face and recognize their successes that do still occur while living with this birth defect. We need to make sure the world knows that my child and so many others born with spina bifida are not suffering from spina bifida. They are living with spina bifida. And ask any family raising a child with spina bifida – these kids are capable of living pretty amazing lives.

If you’d like to see how other individuals born with spina bifida are living with this birth defect please visit the Redefining Spina Bifida facebook page. We’re hopeful to help improve the perception of this birth defect.

Taryn Kim Westover -Thank you so much for this post! I too am living with Spina Bifida.
I was born with it in 1955 back when doctors didn’t know much about it at all. I had surgery to close up my spine when I was 5 days old. The doctors didn’t talk about the challenges we would face because they didn’t expect me to live. The only encouragement they gave my parents was that at the most I MIGHT live to see my 18th birthday.
Well, the Lord Willing, 12 days from now I will celebrate my 60th birthday AND what I call my 42 year miracle. I have lived 42 years longer than the doctors said I would.
I also have only had the one surgery at 5 days old. All other surgeries I have had have not been related to the Spina Bifida.
I get around in a motorized wheelchair and have had the blessing and privilege of traveling more places and seeing more things than most people on two good legs!
My main challenge is people who don’t understand my capabilities and who don’t understand disabled people and what they need in the way of accommodations/accessibility.
Thank you again for this post!

October 22, 2015 - 11:53 pm

Melissa Cork -Best article ever. I’m 32 years old (from Australia). I always cringe when people think you ‘suffer’ from Spina Bifida. People always want to feel sorry for you. But why? We are who we are. Well done a great article. Thank you for sharing your story.

October 26, 2015 - 11:56 pm

Kristy-I love your attitude. My son has a couple of medical conditions and I think it is so important to share photos and information so everyone can better understand that life is not your diagnosis.

Juan Esteban Salas -A great inspirational site! Not just for the amazing photos , but also for the spirit within your words! Your story is an example of what living with spina bifida must be, both for the people with the condition and their families.

I’m a pediatric neurosurgeon who treats fetal and neonatal patients with spina bifida in Colombia, and let me tell you this: you taught me something that can’t be learned from a medical book, and from now, my patients will never “suffer” from spina bifida. THANK YOU!

June 2, 2018 - 4:51 pm

Leah -My son and daughter are going to be 4 in December. Both of them are going to start school for the first time September of 2019. I’m nervous and excited at the same time. We are going to the first meeting next week to discuss his disability and what he is predicted to need as well. I have fully prepared for the meeting by conducting research online and talking to other parents of SB children. From that I have sat down at my computer and typed up a list of questions to ask at the meeting. I also emailed everyone a copy of my list of questions and printed out a copy just in case.

What other questions should I ask at the meeting? If I think of any other questions I will add it to my list of questions to ask at the meeting.

“Hardship often prepares an ordinary person for an extraordinary destiny.” ~C.S. Lewis

Just over five years ago we learned our son Chance would be born with spina bifida. We were told then that he would be born with complications that would require a lifetime of care – and that so much would be unknown until he was born. I was also told then that God doesn’t make mistakes – even those moments that seemed so devastating and imperfect at the time – had an incredible purpose. Now that Chance is here and has faced a great number of challenges in his lifetime, including recent challenges that at times leave me feeling broken – I am reminded…that I don’t always have to understand God’s purpose, but instead trust His purpose.

Each year since Chance was born I have devoted time to capture moments with other families affected by spina bifida with the hopes that this would would help our local spina bifida chapter, the Spina Bifida Association of Central Florida, and so that it would help the world see the beautiful souls I wish I could have met after we initially received the diagnosis. Five years later I still remember the diagnosis so vividly – and I reflect still at that material I was provided. It’s ashame that in 2015 medical professionals have little to no resources – and that parents can’t be provided with more hopeful resources that do more than just inform them what is “wrong” with a person living with spina bifida. Instead families are left to search google and find horrifying images and medical jargon that only leads people to think of the “severity” of this birth defect. Yes, they face challenges in their lives, but who doesn’t? I’m a witness to seeing the challenges of those living with spina bifida and can attest to the fact that each and every person I have ever met with spina bifida has their own unique beauty that we all deserve to see – especially those parents who are anxious and nervous to greet a newborn baby with spina bifida. So can someone please tell me why in 2015 prenatal resources are virtually non-existent and that images of individuals living with spina bifida are rarely included in resources provided to newly diagnosed families?

Each year I’ve spent hundreds of hours of my time and I’ve traveled hundreds of miles to complete this work. Over the past 5 years I’ve photographed more than 70 individuals living with spina bifida (some multiple times) – with the hopes that their sweet souls might help us create change. That somehow, someway…we could create hope. Has it helped? Have we made a difference? Well, I’ve lost count of the people who have contacted me from countries all around the world saying how meaningful it was to them to see this work. Now I just pray that in time we can share so much of this work so much sooner so that in the moments following the diagnosis families will see the faces of those who live with this birth defect daily – to help them see that living with spina bifida IS possible. Sadly I still to this day learn of the families who are just so frightened and consider or follow through with termination – and though I believe everyone is entitled to their own choice I fear the lack of resources available and the way in which a doctor delivers a diagnosis can have a strong impact on how a family copes with the decisions they are presented. Five years later after coming so close to giving up on our baby boy – he is a testament that God doesn’t make mistakes – his life has had a profound purpose…little did I realize it then but his life has lead me to volunteer my time, energy and heart to this work. None of this would would be possible if he hadn’t have entered our lives. Now I can’t imagine life without him. Nor could I imagine it without the families affected by spina bifida that I have come to know so well.

Five years later I present to you a special reflection dedicated to every family I’ve worked with – I thank each and every one of you for helping me help our local community redefine spina bifida. In the past five years our community has grown and our families have grown closer than ever before. Thanks to every family I’ve worked with we’ve not only helped redefine spina bifida within our local community – so many of these faces have also brought hope to families in more than 45 countries around the world.

So here it is everyone – the 5th year of this work – the 2015 Spina Bifida Awareness Campaign. Thanks to every family who has participated this year – I hope you all enjoy it!

A big thanks to Janet Ramos for photographing Easton and Stephanie for this year’s campaign – she did an amazing job and I’m so proud to work with another photographer who is just as passionate about improving the perception of spina bifida.

Deborah Paul -You have outdone yourself again!
The banners are beautiful and truly from the heart!
Amazing!!

October 10, 2015 - 4:52 pm

Brandi Harris -I have 13 year old twins girls, one of them was born with Spina Bifida. The doctors tried to persuade us to cut off her life line due to her birth defects, she wouldn’t be able to do much. God gave us these special girls for a reason. We absolutely can’t imagine our life without her. She is such. Blessing to everyone e she meets with her huge smile and loving personality.